Rare Disease Awareness Editathon on Wikipedia/February 2021

What is a rare disease?

Over 300 million people in the world live with a rare disease, usually throughout the entirety of their life as they are primarily genetic in origin. There are numerous definitions for rare diseases that vary from region to region and country to country, but generally a disease is classified as rare when it affects 1 in 1,000 to 1 in 200,000 individuals in a community. Rare diseases affect the lives of patients and their loved ones or caregivers. Treatment is often extremely difficult for two main reasons: 1) therapy protocols involve costly research 2) the production of medicines is not a profitable field for the pharmaceutical industry, to the extent that often the medications used to treat rare diseases are referred to as orphan drugs. Thus it makes sense that rare disease patients need reliable information they can obtain on the Internet.

How can Wikipedia help?

By making reliable information about rare diseases widely available in as many languages as possible. There is a tremendous lack of articles related to rare diseases on most of the language versions of Wikipedia. On the occasion of Rare Disease Day, designated on a "rare" day - for leap years it is February 29, other years it's February 28 – we're launching the Wikipedia Rare Disease Awareness Editathon for February 2021, hoping that it will be established as an initiative for years to come.

The initiative

Editors from multiple language communities are joining efforts to spread the idea to a growing list of Wikipedias. We have drafted a list of articles that are missing in Greek and Arabic, and we welcome other language communities to join. Add your username/community if you want to join and/or represent your community and add a column to the tables below for your language (if you need assistance, don’t hesitate to reach out to us!)

The articles

We have separated the articles into three main categories: genetic, skeletal and infectious.
The lists below represent articles that are missing from both Greek and Arabic, however feel free to add articles missing from your language to the list. The links to the categories will help you identify what else is missing in your language.
An editor who creates an article can add the link to the table. We will be checking and updating regularly as new content is created.

Rare genetic syndromes

Category: Rare genetic syndromes

Articles
English	Greek	Arabic
3C syndrome	Σύνδρομο Ρίτσερ-Σίντσελ
3q29 microdeletion syndrome	Σύνδρομο μικροδιαγραφής 3q29
8p23.1 duplication syndrome	Σύνδρομο διπλασιασμού 8p23.1
Ablepharon macrostomia syndrome	Σύνδρομο αβλεφαρίας - μακροστομίας
Bainbridge-Ropers Syndrome	Σύνδρομο Μπέινμπριτζ-Ρόπερς
Baller–Gerold syndrome	Σύνδρομο Μπάλερ-Τζέρολντ
Barber–Say syndrome	Σύνδρομο Μπάρμπερ-Σέι
Bare lymphocyte syndrome type II	Σύνδρομο γυμνού λεμφοκυττάρου τύπου 2
Cartilage–hair hypoplasia	Υποπλασία χόνδρων-τριχών
COACH syndrome	Σύνδρομο Ζουμπέρ με ηπατική βλάβη
Kahrizi syndrome	Σύνδρομο Καχρίζι
Neotenic complex syndrome	Σύνδρομο νεοτενικού συμπλέγματος
Xp11.2 duplication	Διπλασιασμός Xp11.2

Rare infectious diseases

Category: Rare infectious diseases

Articles
English	Greek	Arabic
Dioctophyme renale	Dioctophyme renale
Garre's sclerosing osteomyelitis	Σκληρυντική οστεομυελίτιδα του Γκαρέ
Gongylonema pulchrum	Gongylonema pulchrum
Granulomatous amoebic encephalitis	Κοκκιωματώδης αμοιβαδική εγκεφαλίτιδα
Halicephalobus gingivalis	Halicephalobus gingivalis
Human monocytotropic ehrlichiosis	Ανθρώπινη μονοκυτταροτροπική ερλιχίωση
Parechovirus B	Παρεκοϊός Β
Postvaccinal encephalitis	Μετεμβολιακή εγκεφαλίτιδα
Progressive rubella panencephalitis	Προοδευτική πανεγκεφαλίτιδα της ερυθράς
Progressive vaccinia	Προοδευτική δαμαλίτιδα
Sealpox	Ευλογιά της φώκιας
Trichodysplasia spinulosa	Ακανθώδης τριχοδυσπλασία

Rare skeletal diseases

Rare skeletal - or bone - diseases do not have their own category as of yet; we have used the general rare diseases category and the skeletal disorders category to draw up the list.

Articles
English	Greek	Arabic
Conradi–Hünermann syndrome	Σύνδρομο Κονράντι-Χίνερμαν
Gerodermia osteodysplastica	Οστεοδυσπλαστική γηροδερμία
Handigodu syndrome	Σύνδρομο Χαντιγκόντου
Kniest dysplasia	Δυσπλασία Νιστ
Malignant infantile osteopetrosis	Κακοήθης βρεφική οστεοπέτρωση
Metachondromatosis	Μεταχονδρωμάτωση
Osteochondrodysplasia	Οστεοχονδροδυσπλασία
Schwartz–Jampel syndrome	Σύνδρομο Σβαρτς-Γιάμπελ
Spondyloperipheral dysplasia	Σπονδυλοεπιφυσιακή δυσπλασία
Synovial chondromatosis	Συνοβιακή χονδρωμάτωση
Fibrous dysplasia of bone	Ινώδης δυσπλασία των οστών

General

Here is a list of general articles with useful information related to rare diseases:

Articles
English	Greek	Arabic
Center of expertise for rare diseases	Κέντρο εμπειρογνωμοσύνης σπανίων παθήσεων
European Organisation for Rare Diseases	Ευρωπαϊκός Οργανισμός για τις Σπάνιες Ασθένειες
List of rare disease organisations	Κατάλογος οργανισμών για τις σπάνιες ασθένειες
Rare Disease Day	Ημέρα Σπάνιων Παθήσεων
Rare Diseases Clinical Research Network	Δίκτυο Κλινικής Έρευνας για τις Σπάνιες Ασθένειες

What else can I do?

Ideally, we would like to see the articles in the above lists on Wikipedia in multiple languages… but there are simpler things that you can do! Some ideas:

Improve the quality of existing rare disease articles
Translate labels and descriptions of rare diseases on Wikidata to your native language
Upload photos related to rare diseases on Commons

Use the discussion page to post us a note about what you have accomplished, or suggest a new idea :)

Coordinators

Arabic: Mossab Banat

English: Netha Hussain

Greek: Mina Theofilatou

Participants

If you are interested in this awareness campaign, feel free to add your name here:

External Links

Read about the latest in rare disease advocacy by the international alliance of rare disease organizations “Rare Diseases International”

See the factsheet put together by EURORDIS for Rare Disease Day

Publicity

The Rare Disease Awareness Editathon on the official Rare Disease Day page